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Rochester Chosen to Help Coordinate National Parkinson's Effort

December 16, 2004

All roads lead to Rochester – for Parkinson’s patients around the nation who are taking part in many clinical studies of the disease.

The University of Rochester Medical Center has been chosen as home to a new Parkinson’s Disease Data and Organizing Center, an administrative entity created by the National Institutes of Health (NIH) to help coordinate information from the growing number of Parkinson’s studies being conducted by doctors and scientists around the nation. Doctors estimate that there are currently anywhere from 1,500 to 3,500 patients taking part in more than 25 clinical studies of Parkinson’s disease annually.

The new center will pool and manage the data from 15 existing Parkinson’s disease centers funded by NIH and eventually aims to include information from all the clinical studies of Parkinson’s that the agency funds. In effect, data about all Parkinson’s patients around the country who are taking part in studies will pass through Rochester, making the city a hub for Parkinson’s research.

The new center, funded by NIH with $5.7 million for the next five years, will help doctors around the country work together to take advantage of the efforts of thousands of researchers and patients who are seeking new ways to diagnose, treat, and prevent Parkinson’s disease. The team plans to create a shared database that will make it easier for researchers to combine and compare results and spot trends that would benefit patients.

“Working together like this will strengthen the power of the data to answer important questions and should lead to a lot of collaborative research,” says neurologist Roger Kurlan, M.D., a Parkinson’s expert who leads the new center. “Pooling the data will add to the power of our numbers, hopefully allowing us to answer additional questions about the disease that might otherwise go unanswered.”

Such a large body of data will be useful in the search for a blood test or some type of “bio-marker” to help doctors track the progression of the disease – currently doctors rely mainly on physical exams and interviews to follow patients with Parkinson’s. Doctors also hope to narrow down exactly how various genetic mutations contribute to the disease, and they will measure how a patient’s symptoms and brain change as the patient’s illness advances.

Some of the funding will help doctors select standard rating scales that can be shared more easily from study to study. Other funding will help computer programmers develop databases to encompass data from dozens of studies. Earlier this month the team held its first meeting, which included representatives from 12 Udall Centers of Excellence for Parkinson’s Disease Research.

It’s through the careful management of data that scientists can ferret out findings that could ultimately improve the lives of hundreds of thousands of people who suffer from the effects of a disease like Parkinson’s. A host of people, ranging from doctors and nurses to statisticians and computer programmers, play a key role in making discoveries to improve patients’ lives. A center like the one Kurlan heads is key to making sure that volunteers’ time and input in studies are used for the maximum benefit, so that no clue goes uncovered.

Already the University of Rochester Medical Center is home to the Parkinson Study Group (PSG), which was founded and is headed by neurologist Ira Shoulson, M.D. The PSG is a consortium of Parkinson’s disease experts from dozens of medical centers around the United States and Canada who work together to improve treatment for people affected by the disease. PSG already has a large base of people based at Rochester who have managed the data for more than two dozen studies on Parkinson’s disease, and those people will assist Kurlan’s center as well.